The battle against tuberculosis (TB), an infectious disease with a high mortality rate – despite being curable – is made more challenging by the stigma surrounding it. This stigma often discourages people with TB from seeking care and adhering to treatment, as they fear discrimination. Jessie-Lee Smith spoke to the HSRC’s Prof. Sizulu Moyo and Dr Jeremiah Chikovore about stigmatising behaviour and some of the HSRC’s work on this phenomenon.
In 2023, South African activist Phumeza Tisile was recognised on the TIME 100 list of emerging global leaders. At 19 years of age, Tisile was diagnosed with multidrug-resistant tuberculosis (MDR-TB). After a four-year battle, she had lost her hearing but had beaten the disease. Today, Tisile is an adamant healthcare activist who advocates for making TB medication inexpensive and widely available.
Speaking at a roundtable at the 8th Annual TB Conference in June 2024, Tisile expressed concern about the stigma that TB patients in South Africa experience. She emphasised how people infected with TB regularly travel far distances to clinics outside their communities so their peers and neighbours don’t see them seeking treatment for fear of rumours spreading. Taking from her experiences, she discussed the reluctance of patients to adhere to TB treatment because of the judgement and stigma perpetuated by healthcare workers.
Although preventable and curable, TB remains a major cause of illness in South Africa. Early detection and good adherence to treatment are critical to minimising poor health outcomes from TB. According to the World Health Organization, an individual with TB who remains untreated can infect 10–15 people a year.
TB is among the leading causes of death from a single infectious agent globally, and despite making up only 15% of the world’s population, the African region constitutes 31% of those deaths. In 2021, South Africa, the Democratic Republic of the Congo, and Nigeria accounted for 48% of all TB deaths in Africa, and in 2022, an estimated 54,000 people died from TB in South Africa.
South Africa’s first TB prevalence survey indicated that people with TB symptoms often don’t seek care, citing forgetfulness, lack of support from friends and family, distance from clinics, crowded clinics, inadequate counselling, and poor health worker-patient relationships. Stigma, defined as negative attitudes projected onto someone based on perceived differences, remains a significant barrier in the fight against TB in South Africa.
TB patients who report experiencing high or medium levels of stigma are less likely to adhere to medication than those who report experiencing little to no stigma. A recent study in South Africa shows that stigma can cause people with TB symptoms to disengage from care before receiving their test results.
“By the very nature of their transmissibility, infections are inherently feared, and fear breeds ill-founded speculation and suspicion, separation, othering, distance and stigma,” noted HSRC chief research specialist Dr Jeremiah Chikovore and York University Associate Professor Dr Amrita Daftary in an interview with BioMed Central Global and Public Health journal. “For infectious diseases, associated stigma prevents healthcare engagement, drives concealment of illness, and consequently encumbers the ability to receive crucial social and psychological support.”
In 2022, the HSRC published The People Living with HIV Stigma Index 2.0, a study conducted from 2020 to 2021, which assessed different types of stigma related to HIV and TB. In this report, the authors distinguished between internalised and experienced stigma.
Internalised stigma occurs when individuals absorb and accept negative beliefs and stereotypes associated with their condition. These beliefs often lead to feelings of shame, guilt, and diminished self-worth, resulting in psychological distress. According to the Stigma Index 2.0 report, 14.6% of people diagnosed with TB experienced internalised stigma, expressed as a feeling of being unclean or dirty.
Experienced stigma is received from external sources when an individual is insulted, rejected, avoided, verbally or physically abused, stereotyped, or discriminated against because of their illness. This stigma can manifest as open, malicious or intentionally harmful discrimination. For example, 19.8% of participants diagnosed with TB in the Stigma Index 2.0 reported being teased, insulted, or sworn at because of their TB status.
In an interview with the Review, HSRC TB expert and medical doctor Prof. Sizulu Moyo highlighted that a problem with tackling experienced stigma is that often people may not even know that they are perpetuating it. She explained that certain behaviours that perpetrators perceive as innocent can be significantly detrimental to someone with TB. For example, Moyo explained how gossiping can unintentionally perpetuate experienced stigma.
A culture of gossiping in a community or family may deter a person from getting tested, beginning treatment, or adhering to treatment. They may fear being seen at a clinic and the assumptions and rumours that will be made and spread because of it. The Stigma Index 2.0 indicates that gossiping about someone with TB is not uncommon as experienced stigma, as more than a quarter of the participants reported having endured it.
At the TB conference, Tisile highlighted how using specific language can decrease internalised and experienced stigma. “Instead of saying ‘TB patient’ we should say ‘person infected with TB’, which maintains the humanity of the individual,” she said. In 2022, The Stop TB Partnership launched an updated version of Words Matter, a guide to inclusive language that empowers and minimises stigmatisation of affected people.
Another example of unintentional stigma may be what Chikovore and colleagues call compound stigma, which happens when layered or multiple stigmas are perpetuated on a single individual due to association. For example, TB is often associated with poverty, Chikovore told the Review, and a perpetrator might discriminate against someone with TB for being poor, or assume that because a person is poor, they have TB.
Similarly, in low-income and high-HIV areas, coughing, HIV, and TB are regularly used and understood interchangeably, Chikovore and colleagues write. People who are coughing, or those confirmed as having TB, may see their social lives (and, in the case of men, their masculine identities) being severely disrupted. Stigma also worsens how physical symptoms are experienced and can cause people to avoid seeking healthcare or deny that they are unwell.
Chikovore says that the stigma of infectious disease is frequently shaped by the contexts in which it is formed, practised, and experienced. In different contexts, stigma is influenced by intersections of gender, race, social status, experience, education, migrancy, ability/disability, and age. For example, a study on TB stigma strongly suggests that people who had previously had TB were inclined to hold reduced stigma, but stigma tended to increase where people had an understanding of the connection between TB, and HIV and AIDS.
Chikovore argues that understanding the varied forms and impacts of stigma requires more research in varied settings, so that appropriate counteracting interventions can be developed and implemented.
Research contacts:
Dr Jeremiah Chikovore (chief research specialist) and Prof. Sizulu Moyo (strategic lead) in the HSRC’s Public Health, Societies and Belonging Division
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